Twice Disappointed

I’ve had this thought swirling around in the back alley of my mind and for a long time I was too busy and too scared  to get out and explore it. I felt I wouldn’t like what I found and that I would only be left with a bigger mess to sort through. As the saying goes, you can’t put the toothpaste back in the tube. This evasive maneuver was ineffective, however, and the resulting tension manifested in stress dreams of malfunctioning toilets and a facial twitch (being a human is weird).  In a bid to improve my sleep and have a less distracting face, I reluctantly dug a little deeper, fully expecting to be disappointed – and I was. Twice.

With this hiatus from work, I’ve been able to put time toward more fulfilling ventures like writing (the introspection is actually more helpful, but the writing makes it happen) and design projects. In addition, long forgotten odd jobs are being completed around the apartment, and errands are getting done in a (mostly) timely manner. Throw in some personal hangout time here at Royal Jubilee and I felt I had established a fine balance of productivity and self-care. I was still busy, sure, but it was a different busy, a more noble busy, I felt. But then, the other day, there was a pause. I forget what happened or didn’t happen (something about my brain not performing as hoped), but progress stopped as my brain ground to a halt. And this pissed me off. I wanted to get back on the productivity train, working on things and getting shit done. Instead, I waited for my brain’s equivalent of Windows ’95 to defrag and thought about why this upset me so much.

Like everyone else, keeping busy allows me to avoid considering uncomfortable truths about myself. Busyness and productivity have become my gauge for how far I’ve come. The more things I produce, the closer I am to being fully recovered and the further I am from being brain damaged.  As long as I am accomplishing things and getting visible results, I am still on an upward trajectory. As I described in the previous post, however, there is a mental block that I hit with ominous regularity. This is the block that needed defragging the other day. And as I sat, stalled in the middle of a project once again, I found myself considering the ugly notion that maybe this block was the end of the line. Maybe I’m not on an upward trajectory anymore. Maybe this is the plateau they talk about in books. Maybe this is as good as it gets for me.

And I found that pretty fucking disappointing. I found life pretty fucking disappointing. If the rest of my life is going to be just slight variations of this struggle, it sounds like it’ll be hell. It’s like Sisyphus in Greek mythology who was cursed with forever rolling a boulder uphill in Hades, a rather apt description of living with a head injury.  I’m trying to roll this boulder of a brain uphill, exerting my physical and cognitive energy to simply hold this position. There is no further progress to be made, just the inevitable and slow skid downhill from here on out.

That’s the uncomfortable truth I stared down. I let it percolate while I ruminated on what this meant for my bleak future. Acknowledging the shitstorm cloud instead of the silver lining for once was a surprisingly nice change of pace. In some strange way, it felt good to just be there and be disappointed, like yeah, this fucking sucks. Life had drastically oversold and underdelivered. That was the first disappointment, and I looked forward to venting and writing about it. 

Then I was like, but what about neuroplasticity? The brain’s ability to rewire and change itself has been the basis for all I’ve accomplished so far. I’ve read too many books and learned far too much to truly believe that I’ve plateaued. I know that with time and persistence, neural changes are still possible and I’ve got plenty of both. Oh fucking hell, I thought, I can’t even be disappointed for very long.

And that was my second disappointment.

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Struggling Artist

In the previous post I briefly mentioned the neuropsychological assessments I had to take in the months after the car crash. Different tasks designed to measure specific cognitive functions would indicate how well my brain was functioning. In many tasks, like the spatial intelligence one, I scored in the 90th percentile or higher. In fact, my lowest scores were still within the average range for people without head injuries. On paper I was pretty impressive.

In the real world, however, I’m reminded of a phrase one neuropsychologist used to summarize my test results “While Mr. Brandsma shows exceptional abilities in many areas, he will likely have difficulty bringing them to bear.”

…difficulty bringing them to bear.

At the time, I intuitively understood what the phrase meant – that I struggle to make full use of the skills I theoretically still had – but I didn’t put much weight to it. I was rebuilding my life from scratch, and more concerned with fundamental things like basic functions, rehabilitation, and self-identity. Being able to do things that were fun (and/or fulfilling) didn’t really matter to me back then, but it’s starting to matter to me more now.

Since the accident, I’ve spent significant time (and money) on creative pursuits. I  got a camera and several lenses to make use of my sense of composition and colour. I got a computer and a pressure sensitive monitor/drawing tablet to explore digital design. Then I sold that stuff and got a small arsenal of woodworking tools to figure out how to build longboards (among other things). Moving to a smaller apartment, I unloaded my entire wood shop to my dad, got a laptop ,and created this blog. Sometime later, I got an easel, a mass of paints, and a quiver of brushes to hone a style of painting I had developed digitally years before. Eventually, I sold the easel and donated my paints to The Reach Gallery Museum in Abbotsford (where I had coordinated an art program in collaboration with Big Brothers Big Sisters.) Today, I still dabble in photography, graphic design, and woodwork (and writing, duh) but I’m much less invested.

Aside from writing, which is primarily for cognitive exercise and therapeutic value, I really thought I could get somewhere with my creative pursuits. I knew I was skilled and figured that if I had the rights tools – the right camera, the right computer, the right power tools, the right paints – I could do high quality work that might lead to something. What I found, however, is that even with the right tools and all the time in the world to spend on creating, I would just get stuck. It’s not a creative-block kind of stuck though, it’s more encompassing than that; a stifling combination of disability and insecurity. If I can get past the anxiety and fear of putting my work out there, I am often too cognitively drained to be productive, let alone creative. Alternatively, if I’m able to manage my sleep efficiently and set aside time to create, insecurity and apathy convince me to watch Spiderman instead. This back-and-forth tension is tiring and frustrating because I know I’m good at this stuff. I have an eye for these things, I just wish I had the brain for it. 

Part of the trouble with the brain I do have is that I simply have less brain power overall. Most of my energy is spent on work and errands so the pursuit of creativity slows to a crawl. In order to free up time and cognitive space, I’ll occasionally give myself permission to clean up next weekend, leave the laundry alone, and grab a bite to eat. Then I can sit and design or write or just think about stuff. But eventually we need groceries, and clean clothes, and gas in the car, and…and…and… so art is relegated to the back burner once again. 

I’m increasingly experiencing what it means to have difficulty bringing my abilities to bear. The once easy flow of creative concepts becoming physical products is punctuated now with stops and gaps. These gaps aren’t entirely debilitating, but they aren’t entirely negligible either. They land me right back in that sweet spot, or rather, that bitter spot of significant disability AND significant ability, the hallmark of being high-functioning.

The struggles I have now with memory, concentration, concept formation, cognitive multitasking, etc… affect all aspects of my life and I’ve learned ways to mitigate them in general ways (with smartphones and unlimited data plans, it’s a wonderful time to be brain-damaged). In most situations this downgrade doesn’t really bother me anymore – it just is what it is, whatever, I’m used to it. But these same handicaps, when they get in the way of me creating things, frustrate me to no end. The thing is, I’ve never prided myself on having an incredible memory (I mean, my memory was good, but I never went around like, “Hey, watch me memorize this…”). My identity was never centred on how easily I filled out forms or wrote papers so losing some level of ability in these areas doesn’t feel that costly.

Two identifying characteristics where it does feel costly are in my athleticism and creativity. Injury and age has dampened my level of athleticism, as it does to everyone, and I’ve been able to loosen my grip on that part of my identity. The only thing left to hang my hat on, then, is my creativity. This is why being creative is so important to me, and why my struggle to execute is so frustrating. If I can’t create the way I used to, who am I? The timing of my head injury was such that I never got to see where my creative skills could take me, I never got to fulfill my creative potential. Sure, I have done good work even with this beat-up brain; things like this blog, some graphic stuff, and several pieces I’ve built at work I am particularly proud of. On good days, these accomplishments are comforting and assuring. On bad days, and even on neutral days, these things only confirm the potential that remains, and may forever remain, untapped.

I can make a lot of things with a lot of mediums, but I still don’t know what to make of this.

 

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Pun Control

“Why don’t you go ask your dad when they want to have Buddies?” Ms. Herman asked.

I was in third grade and there was some confusion as to when our class was going to meet with the sixth-graders for “Buddies,” a new program where younger students would go read with older students. Dad taught sixth grade at the time so it was natural for me to go down the hall and relay messages like a pint-sized human precursor to text messages.

I could hear Dad teaching as I knocked on the door. I haven’t really thought of it before, but being a teacher’s son at school felt like royalty. While other students called him “Mr Brandsma” I was just like, “Hey Dad!” and I enjoyed these surprise visits to his classroom.

“Ms. Herman wants to know when you want to do Buddies.” I could feel all eyes on me as Dad and I sorted out the logistics, but I didn’t mind. We had the schedule sorted in short order.

“Okay, so tell her we’ll do Buddies after math.” Dad decided.

“So we’ll meet up in the aftermath.” I confirmed. Dad laughed and I think a couple students laughed. This was a pretty sophisticated pun coming from a third-grader and probably too subtle for sixth-graders to catch. It was too advanced for me, even,  because that evening at home I had to ask dad what “aftermath” meant. I knew I made a great play on words, I didn’t know how great.

Evidently, wordplay has been a constant for me from a young age through to adulthood, even as I made way back from the car accident. In addition to the Recreational Therapy, Occupational Therapy, and Physical Therapy I attended at GF Strong, I’d tell staff I was going outside for some Fresh Airapy – it sounded more productive and healing that way.  Today, puns still seem to spill out before I can even finish connecting the thoughts (see what happened there?).  I remember playing a version of the game Scattergories in a psychology class a few years ago, back when I had aspirations of completing a degree. Groups had to come up with areas of psychological study for each letter in the alphabet, scoring points for each one that no other group had. 

“How about for ‘K’, did anyone get one for ‘K’?” the professor asked.

Kleptomania.” I offered. No one else had any suggestions so it looked like another point for my group.

Yup, that counts…” the professor confirmed.

“Yeah, we stole that one…” I deadpanned. Scattered laughter and groans ensued – university students are a much sharper audience than third graders. The professor, eager to engage in some verbal sparring, slo-pitched a weak rebuttal,”They say puns are the lowest form of humour…”

Without missing a beat, I swung for the fences, “They also say wit is a sign of a highly functioning brain…” The professor gave a thumbs up, unable to respond except to ask if anyone had got one for ‘L‘. For those keeping score at home, Jay – 1, Prof – 0

(Scattergories Pro-tip: if you ever need an animal for the letter ‘P‘, you’re guaranteed points with “Pterodactyl.” People overlook animals from the Cretaceous period, not to mention silent letters)

Science confirms that humour is positively related to intellect and wit. A 2016 study from the University of Windsor, Ontario found that puns, in particular, require strong interaction between the two hemispheres of the brain. The left hemisphere processes the language-related aspects of the pun, creating an expectation of meaning and intent. The right hemisphere, which plays a role in processing humour, kicks in soon after, detecting the hidden meaning and humour in the pun – it’s a full-brain exercise delivering a knockout punchline.

From studies like the one mentioned above, I assumed that the ease with which I delivered puns was a good thing, a sign of good brain health. Obviously, as someone who has sustained a severe level of brain damage, any symptom of good brain health is reassuring. An ability to throw out rapid-fire puns told me that I was not inferior, that amidst all the damage and dysfunction, there was still a part of my brain soldiering on, sharp as ever, a piece of my original self.

This continuity was especially important to me early on because it was my original self that had formed my strongest friendships. It was my original self that made Matt laugh until we cried in the university bookstore. My original self teamed up with Andy to semi-successfully longboard down the biggest hills we could find. It was my original self that trash-talked Kais’ shooting range as we played some midnight basketball across the street from the movie theatre. Conversely, this new version was like a shitty software update full of glitches – nothing worked the way it used to, simple tasks took forever to complete, and sometimes the whole system crashed for no reason. I knew people liked the original me, and I didn’t know how compatible this new version was. Puns seemed to be the only app that still worked in version 2.0 and this provided familiarity and comfort through a very uncomfortable time.

Researching articles for this post, I’ve come across an unanticipated twist in the connection between humour and brain function, one that I’m still processing. I read a couple case studies of patients with Witzelsuchtexcessive and/or inappropriate joking as a result of trauma to the brain. The first patient developed a compulsive need to make jokes after a pair of strokes. He would wake up his wife at night to tell her some new jokes or puns he had come up with, then laugh hysterically at them. To get some respite, she suggested he write the jokes down and some of them were included in the study. Personally, I didn’t find the samples very impressive. Unfortunately for me, this reaction could also be a result of Witzelsucht. Both patients in the study, despite being able to identify and understand punchlines, failed to laugh at or be amused by the jokes of others

So it appears that what I thought was an unchanged characteristic of my personality may, in fact, be a manifestation of further, more extensive brain damage. I may actually be even more brain damaged than I thought (not that I had a quantifiable amount in mind). The Witzelsucht study observed that bifrontal injury, damage to both the right and left frontal lobes, appears critical for the development of pathological (compulsive and disinhibited) humour. I’m pretty certain both my frontal lobes sustained some damage and I’ll know more once I get my patient records from Vancouver General (I’ve been meaning to do this for some time, but this blog post was higher up on the to-do list).

In any case, this leaves me in a kind of introspective limbo. Initially, this discovery was a bit of a buzz-kill. That shitty software update may have updated everything, leaving no trace of my original operating system after all. On the other hand, maybe a little compulsion from a damaged left frontal lobe isn’t that bad. Maybe a little disinhibition from a damaged right frontal lobe is a kind of good thing.

Maybe puns are my new superpower, and if so, I don’t mind.

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Self Care Unit 2

I’m sitting here once again in Self Care Unit 2 of Royal Jubilee Hospital (since I came up with the name, I decided to add a number so it sounds more official). It’s Sunday and the unit is nearly empty. Unfortunately, the half dozen people sitting one table over are loud enough that it feels busy. I unfurl my headphones and fire up some deep house music to drown them out. I’m reminded of a roommate I had for a time at Vancouver General, a burly man visited by equally burly friends. They were enjoying themselves but their laughter, as I described then, was like dinosaurs gargling. The group here is just as guttural and emphysemic. I crank the music up and decide that if I damage my hearing, well, at least it’ll be quiet.

It’s a 50-minute walk from home to Royal Jubilee Hospital – a significant walk, sure, but less than the 65-minutes denoted by Google Maps. Beating their estimate by 15-minutes makes me feel like I’m already in great shape, and that maybe I don’t need to exercise as much as I think. Typically, I get my exercise walking to work a 3-4 times a week, and doing a simple workout there at the end of my shift. However, in a bid to care for my overall health, I’ve chosen to take a medical leave from work. Hence, I’ve decided to walk to RJH a few times a week to write or read for the next few months. The walk benefits my physical health; the processing and writing, my mental health. Additionally, I’ll be scheming and plotting a way to get my dream job here as a patient porter. I don’t know how likely that last part is, but I’ve been known to beat the odds – just like The Good Doctor.

In the previous post I discussed how the medical drama The Good Doctor helped me better grasp the shape I was in when I showed up at Vancouver General in an ambulance. The efforts to keep me alive, the complications arising during surgery, the split-second decisions made under pressure – it all feels more real having watched the staff at San Jose St. Bonaventure Hospital. In addition to this greater understanding of my past, the show also helps me with my present, in the character of Dr. Shaun Murphy himself.

To be clear, of course there are significant differences between an autistic surgeon with savant syndrome and a brain-inured maintenance guy on stress leave. Both neurological conditions are infinitely diverse from one case to the next, and comparing the two is like comparing apples and hinges.  One particularly unfortunate difference is that I don’t get to wear scrubs (scrubs, in my mind, are the cotton equivalent to Iron Man’s suit –  maybe I’ll get some for Halloween and be a superhero). Nonetheless, the similarities are also significant and have left me more than a little moist-eyed watching the show. Dr. Murphy, like myself, struggles with interpersonal communication, and has difficulty focusing in noisy environments. Similarly, while I don’t have savant-level intelligence or perfect recall as Dr. Murphy does, I do have a strong sense of art and design, and I know my way around a blog. In other words, Shaun and I are referred to as “high-functioning”, and though this label sounds positive, even encouraging, having pronounced disabilities presenting with notable talents is a difficult place to exist in.

For the past 16 1/2 years (my brain damage is old enough to drive – oh, they grow so fast) I’ve been trying to reconcile these deficits and disabilities with my remaining high functions. My early approach was to deny any changes and challenges altogether. I wanted to declare to my family and friends, “I’m not different! I’m just like other people!” It’s a classic post-trauma response, of course, but knowing this did not make me immune to it. I remember speaking with a doctor at GF Strong and saying, “I know I’d be the last person to know, but I don’t think I have any brain damage.” Despite the somber prognosis of my condition, I focused on the promising results of the many neuropsychological assessments I had at the time. Clearly I’m not disabled, I thought, my spatial intelligence is in the 98th percentile. Unsurprisingly, I deliberately ignored results that suggested difficulty in other areas.

It didn’t take long for this misplaced self analysis to buckle under the accumulating weight of evidence that things were, indeed, different. I was feeling things I’d never felt before; I was stressed, I was anxious, I was confused and angry. Eventually, I conceded that things were different but I figured that with enough time, I would heal up and be as good as old. After all, I wasn’t forgetting my keys nearly as often anymore.

In the ensuing months and years, though I still wrestled with the thought of being disabled, I began to see some benefits to being considered disabled on paper. For example, since it was officially determined that I was “significantly permanently partially cognitively impaired,” I qualified to have my student loans forgivenbonus (but still, totally not worth it). Being a PWD, (Person With Disability) I qualified for a job-training program that subsidized my wage to train as a bike mechanic at The Fort Langley Cyclery. They got full-time work for part-time cost, and I got sweet bikes on staff discount. Even so, I still didn’t consider myself “Disabled” for real. Instead, I considered myself to be “Disabled Lite” and felt a little guilty for gaming the system and reaping perks I didn’t really deserve. The fact that I didn’t qualify for certain aid programs because I wasn’t disabled enough reinforced this notion.

Today, I recognize my deficits and that certain measures need to be taken to accommodate and compensate for them. In order to make best use of my limited cognitive energy, I distill tasks to their simplest steps and streamline every detail. I develop efficient systems and insist that others adhere to these systems. I know this level of specificity is strange, somewhat uncommon, and probably annoying, but that’s the way I work and it’s important to me. I need things this way. When this isn’t acknowledged or accepted, I feel like declaring, “I’m not like other people! I’m different!”  

The truth is I don’t fall into either camp – I’m not entirely disabled but I’m not entirely abled either. I’m very different, and I’m very similar. High-functioning is a spectrum and my position on it is fluid, depending on the task, the skills required, and how much sleep I’ve had. This constant fluctuation affects not only my self-identity and self-esteem, but also the expectations I have of myself and for myself. Some days, in some ways, I’m more than able and the sky is the limit; other days, in other ways, I’m indisputably disabled and it’s only downhill from here. This is the tension of being high-functioning.

 

 

 

 

 

 

 

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Self Care Unit

For a long time, coffee shops were my de facto office for blogging, but I’ve found an even better place. It’s quiet, the lighting is fantastic, and even the smell is pleasant. Most importantly, there is just the right amount of people passing by that I can switch easily between focused attention and deliberate distraction. The nearest free parking is a block away, and I have to relocate every hour or two as the time limit is reached, but on balance, Royal Jubilee Hospital makes a great new office.

As we all know, I’ve logged some serious hours in hospitals in my time, the most recent due to adverse reactions to the chemotherapy I was on last year. I’ll be back here in two days for a fluoroscopy to see if anything can be done to ease the discomfort in my throat (there’s a stent holding my left vocal cord in the “ON” position. It helps me speak clearly, but also causes me to cough persistently to clear my throat). A couple weeks after that I’ll be back here for a CT scan of my left wrist which I injured 6 weeks ago (we suspect a fractured scaphoid, a tiny bone at the base of the thumb). Any treatment needed for that will likely mean additional visits here. The frequency of hospital visits shows no sign of slowing and that’s just fine by me.

*****

Rox and I recently cancelled Netflix and subscribed to Crave+HBO. Watching TV is a very effective brain break, perfect for when I’m too cognitively fatigued to do anything, but not tired enough or ready to go to bed. I’m not one to really get into actual TV shows and typically spend more time watching YouTube channels of painters, woodworkers, and other creatives. That said, I am fully hooked on The Good Doctor, a medical drama centred on Dr. Shaun Murphy (played to perfection by Freddie Highmore), an autistic surgical resident with savant syndrome at San Jose St. Bonaventure Hospital. I finished binge-watching both seasons currently available yesterday so I just started over again; medical jargon has become my second language.

This show has shed light on some of what happened to me in  Vancouver General Hospital all those years ago. Watching a patient at St. Bonaventure go into cardiac arrest and a doctor massaging the heart during surgery, I get to see what my body has gone through. When the doctors have to make split-second, life and death decisions on a patient coming to the ER with multiple traumasI get a sense of the urgency with which I was attended to. I see surgeons fighting to save a kidney before removing it in order to save the patient and realize the same decisions were made when I was on the operating table

*****

As I’m writing here, I realize I need some clarification and approach a table next to me where four people in scrubs are sitting, “Sorry to interrupt, but can I ask a general surgical question?”

“Sure,” answers the oldest guy, Mike, who I learn is an instructor at the hospital.

“Which type of cardiac arrest requires manually massaging the heart, and is that scenario what’s referred to as ‘flatlining”?” My quick internet research is making me sound more educated than I am, but then again, my experience is an education of sorts.

“Well, that type of therapy is used when regular CPR techniques aren’t an option, like during surgery or if the ribs are fractured. It’s an emergency last resort.”

“So if that doesn’t work, there’s nothing to try after that.”

“Right. Why do you ask? Are you a med student?”

“No, that happened to me.”

As expected, jaws drop, and the conversation turns to a brief history of what I’ve survived. The group expresses amazement, first that the heart massage was a success, then again when I tell them I had my left kidney and spleen removed. Just as they’re getting over that, I hit them with the whole torn aorta thing and they’re levelled once more. As they slowly begin to regain composure I’m asked what caused the head injury. I tell them it was a car accident and that my C-1 vertebrae was fractured. Now I’ve really made their day. Mike, the instructor, suggests different avenues for me to share my story, either at high-schools or even with med school classes. I respond that the cognitive workload makes it cost prohibitive, but I wonder if the rewards could be greater than I anticipate.

After enjoying this bit of celebrity and once the group has left, I sit and wonder what the ER looked and sounded like when I was on the table. From my conversation with Mike, I now know that I went into an asystole cardiac arrest, and did indeed flatline for three minutes.  I find this image of a left-sided thoracotomy (the surgery performed to gain access and repair my aorta, among other things) and just stare at it, imagining the high-pitched tone of the ECG, constant for three minutes.

It’s intense.

*****

I’ve been feeling detached lately – unsettled, slightly anxious, and getting a little depressed because of it. I had this sense that I’d forgotten something important, and that I needed to pay attention to something somewhere. I feel that writing here at the hospital has helped, and I’m starting to understand why I like spending time here. In the hospital, whether it’s the MSA Hospital in Abbotsford, Vancouver General, Victoria General, Saanich Peninsula, or Royal Jubilee here in Victoria (all of which I’ve spent time at), there is a higher concentration of people who more fully appreciate what I’ve been through and the implications of it. I don’t feel as misunderstood here, and it’s comforting. Most people here are either going through something life-altering or treating someone who is. Some, like the group of scrubs I spoke with earlier, appreciate what an asystole cardiac arrest is to an extent I’m only beginning to grasp. Just now, I asked a couple women one table over if the correct phrasing is “asystolic cardiac arrest” or “an asystole cardiac arrest,” and one of them, a cardiac nurse, informed me it’s the latter. Interactions like that are why I set up here in the Diagnostic & Treatment Centre instead of the more casual Patient Care Centre atrium next door.  The hospital feels like my home away from home. The people here are my people, and spending time here is spending time with a part of myself that gets buried in the day-to-day hustle. 

*****

It’s 1:18pm now and I’ve been here since 7:00am. I’ve moved my truck three times and have 6 minutes before I need to move it again. I took this week off work to address this drifting feeling and I’m proud of myself for listening to my body/brain and deliberately working to process what I’d been experiencing. I think I have enough time to grab some Timbits downstairs, maybe hit the Subway over in the Patient Care Centre, then catch an episode of The Good Doctor before picking Rox up from work. It’s been a good day.

 

 

 

 

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Spare Change?

So here we are again, creeping up on the 16th anniversary of my car accident, my acciversary. I’m writing this in the cafe at Vancouver General Hospital, my home for two months back in 2003. Various staff members dressed in scrubs are scattered around the lounge, one tries to nap with her hoodie on backwards to block the light. I haven’t wandered around the Intensive Care Unit or the Trauma Special Care Unit today, but just being at the hospital feels like tribute enough, and it is especially conducive to writing a blog post.

Yesterday I was having coffee with Jon, my good friend and former boss at the Cyclery. He sustained a significant head injury in a bicycle crash five years ago. When we aren’t laughing about puns and bike shop stories, or geeking out over woodwork and the latest gadgets from Makita and Festool, we swap thoughts and lifehacks for living with brain damage.

I have an 11-year headstart (headinjurystart?) on Jon in terms of living post traumatic brain injury and in our conversation Jon asked “So, what changes?” I took a moment then told him the anxiety decreases. I used to be crippled with anxiety, especially in social settings and large groups of people (note: large = 3 people). Anticipatory anxiety ruled the lead up to any interaction, social anxiety levelled me during it, and ruminating  fuelled my anxiety afterwards. Anxiety was my closest and worst friend.

Today, as I told John, I haven’t had that level of anxiety in years. I’ve recovered from that particular aspect of injury and I’m generally pretty relaxed, just like I was pre-accident.

But I’m not like that at all.

True, I don’t get stressed out and anxious like I used to 16 years ago, or even 10 years ago, but that has nothing to do with recovery or some trait that I’ve returned to. It’s only because I’ve arranged my life in such a way that avoids the stress triggers I was, and continue to be, sensitive to.  The thing is, it happened so gradually that I didn’t even notice. I look at myself and think, “Ah, I’m just not a people person…” and “I just really enjoy watching movies instead of doing stuff with people…” and “I would rather just chill out at home instead of going out, that’s just the way I am. I’m a mellow dude.” These statements are true, but they don’t describe innocuous, natural developments. The developments are a response, a reaction to an originating action: the car accident. Avoiding stress and anxiety was the first and only thing I thought of early on, and it wasn’t until Jon asked that I realized it still is. Whether it’s social anxiety, physical stress related to my spinal issues, or cognitive deficits at work, I instinctively arrange things the way I need them to suit me best.

For example, the whiplash that fractured my C-1 vertebrae also tore most of the ligaments on the left side of my neck. This one fact, alone, has caused a ripple of necessary interventions. I sleep on my back with my head tilted slightly to the left to engage the ligaments on the right side of my neck. If I were to fall asleep with my head to the right, it would settle in at too much of an angle (as if I were looking over my shoulder all night) and I would likely need a chiropractic adjustment. I can lay on my left side for a little while, my right side even less, and never on my stomach. Back when I was at school and even now at the movies, I take seats on the right half of the room so that I’m always turned slightly to my left to see the action up front.

I carry earplugs with me now. I put them in at coffee shops if it’s too crowded, at my sister’s place when the kids are vying for attention, at work when my boss’s dog shows up. It’s automatic and makes things less stressful. To me, it’s not weird anymore, it’s just necessary. These accommodations, and countless others, have become habit over the years, so much so that I forgot they were accommodations in the first place.

So what changes? The newness of everything changes. The challenges and deficits I encountered have become old news, the adjustments I’ve made in response to them, slightly less old. I see the effects of the car accident everywhere and nowhere at the same time, I’m just that used to it.

That’s what changes, Jon, you get used to it. All of it.

 

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Unluckiest Guy Alive.

This month marks 15 years since the car accident, and it feels like a suitable time to revisit this blog with an update. I’m on the ferry heading to Vancouver from Victoria where Rox and I have been living for a couple years. The ferry is strangely empty and it’s almost spooky how quiet it is. It’s mid-day but the ocean and the sky are different shades of the same grey. I wonder if we inadvertently boarded a ghost ship, and if so, I hope the usual boarding announcements will be made by Captain Jack Sparrow, or at least someone who sounds like him.

It’s something of a loosely held tradition to go see my old stomping grounds each year to chat with the folks working in the Vancouver General Hospital Intensive Care and Trauma Special Care Units. Recently I’ve started bringing my car accident/hospital stay photo album to help them connect the dots of who I am now and which guy I was then. This year I’m also equipped with six dozen black Sonix Gel pens, the clicky kind, you know, because pen lids are a hassle and tend to go missing.  In the ICU, good pens are cash money and today I’m making it rain.

Hospitals, to me, are like Club Med, an all-inclusive facility where everyday worries fade away, the  room service is impeccable, and all you do is lay around and joke with the staff.  My uncommon affinity for medical care facilities was reaffirmed three weeks ago at the Royal Jubilee Hospital in Victoria. I was scheduled to have a malignant melanoma removed and a subsequent skin graft to close things up again. Melanomas are a type of cancer, and mine had been growing for five years. When the initial biopsy results returned positive for a superficial spreading melanoma, my first response was, “Really? That’s what we’re doing now? Of all the dumb luck…” My mind started tallying up the challenges I’ve had to endure, hitting me with the highlights: brain-damage, divorce, cancer. Life was constant maintenance work before cancer, and now I have to deal with that too?

Sometimes the fifteen years since the car accident feels like a fifteen-year streak of bad luck. It’s as if the car-accident released the floodwaters of stress, trauma, and pain into the canyon of my life. What was an adventurous journey on a steady current became a fight for survival down treacherous rapids. And sometimes I wish it would just let up, you know? Brain-damage, divorce, AND cancer? Enough, already.

The other day, as I was mulling over this latest tough break, a totally contradictory thought flashed in my mind – what if I’m actually one incredibly lucky sonofabitch? Well, ok, I thought, let’s see where this goes.

Okay, the first one, the car accident, is an easy one. The doctor’s gave me a 1 in 10 chance of survival, remember? There was a ninety percent chance I would die – ninety percent!! If I were a betting man, I’d go with the ninety percent odds, take my money, and run. But I’m not a betting man, I’m a lucky man, and beating the odds of survival is just the beginning.

The complexities of the brain mean a staggering variety of impairments can occur when the brain is injured. The damage to my brain was a severe amount, first from the impact of the truck hitting my side of the car, and later from my brain’s oxygen supply being cut off through three minutes of cardiac arrest. Yet my level of functioning baffled doctors early on and continues to today. I’ve become increasingly efficient at working around the biggest obstacles and even overcoming others. That kind of trajectory in recovery doesn’t happen everyday, but it happened to me.

Next, divorces are painful and difficult to go through, that’s a given, yet it doesn’t take much to see that mine was handled pretty well. Despite the inevitable challenges that arise in divorce, I know that care was taken to ensure that I was not unnecessarily burdened. We don’t chat or email often, but when we do there is still care and compassion. Some say amicable divorces are a myth, but my luck is mythical too.

Finally, of the four types of melanoma, superficial spreading melanoma is the most common and least invasive. In that sense, it’s not surprising that despite growing for five years, the tumour hadn’t appeared to have invaded my lymphatic system (even so, the sentinel node, the one closest to the melanoma, was removed along with the next two as a precaution). What is lucky about this whole experience is that, because of the pre-op paper work and post-op follow-ups, I needed a family doctor. The walk-in clinic doctor I usually see asked a colleague and she agreed to be my doctor. Do you know how hard it is to get a family doctor in Victoria right now? The odds aren’t great, I’ll tell you that.

In sum, I survive a car accident when I should have been written off along with my car, my brain is rewriting the textbooks (or at least this blog) on what brain damage means, the long-term effects of my divorce are negligible, I get the good kind of melanoma, and no longer have to wait at walk-in clinics.

Try finding someone who catches those kind of breaks. Good Luck.

 

 

 

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